UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

I'm not sure if this is the thread to place this in (I though there was another thread on the response to NG206, but I can't find it), but I wanted to mention the Royal College of Psychiatrists' response to the recent Moncrieff et al review (discussed here in this thread) where they find "no support for the hypothesis that depression is caused by lowered serotonin activity or concentrations".

An article in The Guardian, Little evidence that chemical imbalance causes depression UCL scientists find - Researchers question use of antidepressants, prescribed to one in six UK adults, discusses the review, where the lead author says:

“Many people take antidepressants because they have been led to believe their depression has a biochemical cause, but this new research suggests this belief is not grounded in evidence. [....] It is always difficult to prove a negative, but I think we can safely say that after a vast amount of research conducted over several decades, there is no convincing evidence that depression is caused by serotonin abnormalities, particularly by lower levels or reduced activity of serotonin. Thousands of people suffer from side-effects of antidepressants, including the severe withdrawal effects that can occur when people try to stop them, yet prescription rates continue to rise. We believe this situation has been driven partly by the false belief that depression is due to a chemical imbalance. It is high time to inform the public that this belief is not grounded in science.”
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The Royal College of Psychiatrists reacts to this news with:

However, other experts, including from the Royal College of Psychiatrists, questioned the findings and urged people not to stop taking their medication in light of the study, arguing that antidepressants remained effective.
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and

A spokesperson for the Royal College of Psychiatrists said: “Antidepressants are an effective, Nice-recommended treatment for depression that can also be prescribed for a range of physical and mental health conditions. We would not recommend for anyone to stop taking their antidepressants based on this review, and encourage anyone with concerns about their medication to contact their GP.”
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I thought this was relevant to their attitude towards NG206.

1. They question findings and argue the effectiveness of treatment despite the review saying it is not evidence-based
2. They argue in favor of the treatment by referring to it being recommended by NICE.
 
This is the trend. Once you see it you can't miss it, but for the most part:
  1. This is a great study, solid evidence based on science = I personally (or we, the authorities) like what this says
  2. This is a biased study, not evidence-based = I personally (or we, the authorities) don't like what this says
Seriously, the entire evidence-based medicine paradigm is a giant failure, it's completely unreliable in itself because it mostly amounts to a popularity contest, it's a pseudoscience-laundering machine, it can produce completely unreliable conclusions. It needs a complete replacement and frankly most clinical evidence formed on the basis of this process needs to be downgraded until assessed with reliable methods. It's the medical equivalent of a security theater.

It's basically a ritualized version of how things were before the scientific method, it's process-heavy but that process is nothing but production value, like a terrible nonsensical movie with a huge production budget. All you can say is that it's expensive.
 
rvallee said:
Seriously, the entire evidence-based medicine paradigm is a giant failure, it's completely unreliable in itself because it mostly amounts to a popularity contest, it's a pseudoscience-laundering machine, it can produce completely unreliable conclusions. It needs a complete replacement and frankly most clinical evidence formed on the basis of this process needs to be downgraded until assessed with reliable methods. It's the medical equivalent of a security theater.

It's basically a ritualized version of how things were before the scientific method, it's process-heavy but that process is nothing but production value, like a terrible nonsensical movie with a huge production budget. All you can say is that it's expensive.
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It has turned into a political gadget (there is a better word I can't reach right now), if it wasn't always intended that way.

Seems that dragging up poor evidence as 'something to cite' and banging on about nonsense personality ideas based on lame correlations as if they are fact without asking the individual what exactly happened has become the cliche of the day to get the tick in the box of 'being clever'. Basically whether it is accurate, or relevant to context is thrown out of the window because 'bla' - to 'say something' and tick the box of 'claiming evidence' - is most important. It misses the point and does the exact opposite of what it purports or infers it is.

It's like someone seeing that a recipe didn't come off and instead of sitting down and saying 'what's wrong with it, the rise or the taste etc' and asking the maker what ingredients they actually used specifically and the intricacies of what they actually did to get to the bottom of it, someone citing 'it's too hot an oven' based on some dodgy research that 42% of cakes fail if the oven was too hot got translated by aggregate methodology into 'all cakes were 42% worse due to hot ovens' and then telling the cake-maker to shut up when they say it wasn't.

We've all met people who are like that in real life, whether it is a recipe or some other doesn't matter thing you chat about and just roll your eyes - when it gets into important areas then it is a big issue. The attitude reminds me of the old 'talk to the hand not the face' attitude that I remember being 'the fun phrase' a number of years ago.
 
rvallee said:
This is the trend. Once you see it you can't miss it, but for the most part:
  1. This is a great study, solid evidence based on science = I personally (or we, the authorities) like what this says
  2. This is a biased study, not evidence-based = I personally (or we, the authorities) don't like what this says
Seriously, the entire evidence-based medicine paradigm is a giant failure, it's completely unreliable in itself because it mostly amounts to a popularity contest, it's a pseudoscience-laundering machine, it can produce completely unreliable conclusions. It needs a complete replacement and frankly most clinical evidence formed on the basis of this process needs to be downgraded until assessed with reliable methods. It's the medical equivalent of a security theater.

It's basically a ritualized version of how things were before the scientific method, it's process-heavy but that process is nothing but production value, like a terrible nonsensical movie with a huge production budget. All you can say is that it's expensive.
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You hit the nail on the head so often and so eloquently. These three quotes in particular describe Cochrane to a tee

rvallee said:
it's a pseudoscience-laundering machine
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rvallee said:
it's process-heavy but that process is nothing but production value
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rvallee said:
All you can say is that it's expensive.
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A quick search of the Cochrane Library for a review including SSRIs found this little 13 year old never to be updated yet used in 5 guidelines gem https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007954/full?highlightAbstract=ssri
Check out the declarations of interest.
 
Caroline Struthers said:
A quick search of the Cochrane Library for a review including SSRIs found this little 13 year old never to be updated yet used in 5 guidelines gem https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007954/full?highlightAbstract=ssri
Check out the declarations of interest.
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I think they are behind the paywall? Otherwise there's this bit and it's a doozy:
Most of the studies were supported by funds from pharmaceutical companies and were of short duration.
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Hey, if we can't trust the good executives and shareholders at tobacco companies who generously funded research into their product, who can we possibly trust?

I guess it seriously is a simple: no one. Literally no one can be trusted about anything, not even institutions built on trust. Always verify, verify and once more for good measure. Also: measure, actually measure things, if you're not measuring something real you're simply not doing serious work. Criticize, pick apart, demand, never accept the premise of a damn lie and even ordinary claims require evidence, but damn do extraordinary claims badly require vastly more.
 
rvallee said:
I think they are behind the paywall?
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no.
"Declarations of interest
BA is a member of the Primary Care group of the Future Forum and Educational Foundation funded by AstraZeneca (UK). BA is also a member of the Pharmac seminar series board. Pharmac is the New Zealand government funding agency for pharmaceuticals. BA has also been funded to a conference by Sanofi‐Aventis."
 
Sly Saint said:
no.
"Declarations of interest
BA is a member of the Primary Care group of the Future Forum and Educational Foundation funded by AstraZeneca (UK). BA is also a member of the Pharmac seminar series board. Pharmac is the New Zealand government funding agency for pharmaceuticals. BA has also been funded to a conference by Sanofi‐Aventis."
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lmao Cochrane is an absolute joke.

Also something else I noticed in the sentence I quoted, it says that all trials were of short duration, but because of withdrawal effects, SSRIs are usually taken long-term.

Which, uh, adds up to the same: lmao Cochrane is an absolute joke. This, THIS, is the gold standard of medicine? No wonder things are FUBARed.
 
An Update On The Scottish Implementation Of The NICE Guideline

The Scottish Government has made the decision that the NICE guideline will be implemented by updating the Scottish Good Practice Statement (SGPS) to reflect the changes in the guideline. The SGPS was published in 2010 and provided better information and guidance than the previous NICE guideline, but health professionals were unaware of it and it is now outdated. #MEAction Scotland has reservations about the effectiveness of updating the statement when it has never been widely adopted. When discussing the SGPS in the Blake Stevenson report, there is a quote from a person with ME: “I referenced it in a meeting with a GP and they had not heard of it.” We know that isn’t unusual.

https://www.meaction.net/2022/07/29/an-update-on-the-scottish-implementation-of-the-nice-guideline/
 
Putting this here because it's relevant to how familiar/unfamiliar NHS clinicians are with the NICE Guideline:

"Growth in NHS recruits from abroad prompts concern about over-reliance

The NHS in England is increasingly reliant on doctors and nurses recruited from outside the UK and EU, analysis has found.
Some 34% of doctors joining the health service last year came from overseas, a rise from 18% in 2014.
The government said overseas recruitment had always been part of its strategy.
But unions have warned it is an unsustainable way of recruiting in the long-term.
A total of 39,558 domestically trained doctors and nurses joined the NHS in 2020-21, which is just over 3,200 more than in 2014-15"

More at link: https://www.bbc.co.uk/news/uk-61230287

 
Tom Kindlon said:
(From last year)
From Sheffield ME & Fibromyalgia Group:

You can find the 3-page summary <> from our Chair Carolyn about the NICE guideline for ME/CFS released in October 2021. This article was published in the Winter 2021 edition of our members' magazine.
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The improved understanding of post-exertional malaise and inclusion of cognitive
difficulties is a huge step forward.
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This feels like it is walking back quickly in the last year I'm afraid. We've gone from 'peak' PEM and cognitive fatigue types and being understood pre-covid and guideline, to somehow in the last year all this getting slowly disappeared. And lots of brain fog nonsense coming back again. Is this covid and trying to mix the 2 - and if so is it because there are different types of covid, where there are differences with this vs ME or is it the predictable attempt of medics to do to covid the same tricks they did for ME, which sadly due to the tie means they have to do it to ME too?

While some clinicians are clearly concerned about
the removal of graded exercise therapy, some
equally reported feeling very restricted by only
being commissioned to offer some form of
activity management/pacing, along with CBT
and graded exercise.

The recommendations for more robust care planning and support has
the potential to open up possibilities for clinics
to argue for better resources, for example, aids
and multi-disciplinary teams. Adam Lowe
suggests that now, "clinics can push
for a broader range of skills in their
team, for example, dieticians,
consultant physicians, specialist nurses,
and experts in orthostatic intolerance,
sleep and pain."
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This is much needed and 'job advert watch' seems to also highlight massive issues in this area. At a year in I think that ForwardME needs to do a 'stop, flag'. We can't have new posts being filled with nonsense-staff under whatever guise anymore.

If someone doesn't call it, on them trying to get away with rolling over 'business as usual and see if they stop us', the whole thing with be self-perpetuating, new staff will hinder changing layouts etc. It's time for each to submit plans on what they will become and plans for how to do that.

Staff leave and they are filling these new spaces with problems that will prevent this happening in future, rather than having a system where they'd need to ask for special dispensation only where there is a provable issue with evidence they've not done so in a way that closes off the opportunity for them to work in the right way in future.
 
Arvo said:
I'm not sure if this is the thread to place this in (I though there was another thread on the response to NG206, but I can't find it), but I wanted to mention the Royal College of Psychiatrists' response to the recent Moncrieff et al review (discussed here in this thread) where they find "no support for the hypothesis that depression is caused by lowered serotonin activity or concentrations".

An article in The Guardian, Little evidence that chemical imbalance causes depression UCL scientists find - Researchers question use of antidepressants, prescribed to one in six UK adults, discusses the review, where the lead author says:




The Royal College of Psychiatrists reacts to this news with:



and



I thought this was relevant to their attitude towards NG206.

1. They question findings and argue the effectiveness of treatment despite the review saying it is not evidence-based
2. They argue in favor of the treatment by referring to it being recommended by NICE.
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At no point is there a stop, oh, this is interesting let's find out what is best for the patient by adding this to our knowledge base. I think to anyone who stands back and just has ultimate trust for that profession they should watch and look that sort of thing. But they don't, because there is just enough stigma kept, at the same time as calling 'anti-mental health' if someone questions whether the system is good enough for those looking after people with mental health (ironically) to ensure such people keep hands off from calling out.
 
From another thread:

SNT Gatchaman said:
Eight major errors in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis
White, P., Abbey, S., Angus, B., Ball, HA., Buchwald, D., Burness, C., Carson, A., Chalder, T., Clauw, DJ., Coebergh, JA., David, A., Dworetzky, BA., Edwards, MJ., Espay, AJ., Etherington, J. & Fink, P.
2022, (Accepted/In press) In: Journal of Neurology Neurosurgery and Psychiatry.

I can't see it published yet but it's referenced on Per Fink's CV.
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The Journal of Neurology Neurosurgery and Psychiatry is published by the BMJ group and Alan Carson is one of the Journal's Associate Editors.
 
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